Thanks again for all your kind words while I was waiting for my first appt with the Rheumy following his voicemail to me confirming RA.
I have to say I was completely shocked that the Dr spent the kind of time with me that he did - OVER 2 hours! Somehow I am still confused though...in spite of all that time he spent with me. I just can't seem to get my head aound this...
He was very nice and thorough - but how do I know if his treatment plan is the right approach. I've read soo much now that I think I have further complicated matters for myself too by "knowing just enough to be dangerous and not much else" .. .
Also, long story short, treatment-wise, I am on a high dose "pred. pack" right now that he wants me to be tapering down to 7.5 mg daily and he prescribed methotrexate 2.5 mg pills (6) once per week and 1 mg folic acid and plenty of pain killers.
Set up another appt with me in one month, and I am supposed to have follow up liver related lab work done a few days before that. And even proactively offered to fill out any additional job related paperwork I might need done, to stay on short term disability for another month or two from work as well.
So after all this insanity of wondering what was wrong with me and trying to just get through the pain, it all off the sudden seemed to become so simple and smooth - like I was being treated for strep throat or something...
So now, FROZEN, I am just sitting here with the bottle of methotrexate (and oddly enough feeling better today than I have in months) feeling frozen - just thinking about all of these things. Like how do I know if that is the right drug for me? Or if I should be on some sort of combination therapy like I have read about or oR OR....
And of course terrified of the side effects of the methotrexate, terrified to get started....And with my sudden reduction in pain today, wondering if maybe there just hasn't been a mistake? Should I be getting a second opinion? Am I nuts here? Did any of you have this kind of process, reaction?
Regards,
Melly
Are you feeling better because of the pred pack? Prednisone works great and rather quickly.
I was scared of the medicines too and I'm on something similar to you. 20 mg of MTX and 10 mg of Prednisone. After a couple of weeks of taking the MTX my body got used to it and I'm now feeling a little better.
For me it was quite simple, not be able to function or take the pills. I opted for the pills. Sucks, but it is, what it is........
It really might be that prednisone like Debrakay said that is making you feel so much better and having you wonder if this is the right course of treatment for you. Some of the pain relief might also be coming from the firm diagnosis you have and now treatment course you also have. Stress causes us sooooooo pain sometimes!
You have a great doc! It is rare to find them as proactive as yours. I have one like that too. He signed FMLA paperwork for my husband so he is able to take off of work to care for me when I need it without batting an eyelash. He also suggested my disabled parking placard and signed that paperwork when I brought it in to him.
Your doc is starting off on what I feel is a good treatment course. Most of us started off like you, but just mtx with pred wasn't quite enough and then a biologic was added to make that combination therapy. Give what your doc is doing a try first. If it doesn't help, then think about combo therapy.
Take your meds!!! If the stomach side effects from the mtx pills get to be too much to handle, you can always call up your rheumy and tell him you want to switch to the mtx injections.
You are not nuts. Well...maybe in that good way most of us are lol.
Melly,
It is always a bit overwhelming at first. The pred pack is probably the cause of your feeling better. However, I am a great believer in 2nd opinions if only to hear another doctors perspective but keep in mind it will most likely take a couple of months to get into another rheumatologist so what do you do in the meantime.
From what you have said your doctor is doing everything right. The medications and dosages are appropriate for a first prescription and he has scheduled a fairly quick followup.
Start making a list of questions that occur to you, just keep a running list. That way you won't forget anything at the next appt.
Hi melly, after you've been worrying about this so much you are probably having a hard time 'not worrying', most of us here have gone through the 'waitin' period, we just wait to see what the drugs will do to us or for us. Your treatment is similar to what I used to take befor my 'super flare' , I took Methotrexate and folic acid. I did take vioxx pain meds. Now, because of extreme conditions I'm also on prednisone (like you it worked great for me), MTX the same 6x2.5 weekly and they have added remicade, my 4th infusion tomorrow). I want to get off of the prednisone, but when I reduce it I have pain and stiffness, so the reason for more Remicade.
It is hard to 'wait' this out. I can understand your anxiety, and the love-hate relationship with these super drugs and their potential for after effects, and long term effects, etc. You've been reading, but remember the literature may be for a lot more of the medication than we are given. Often this is given to cancer patients in huge amounts!, the small amount we get is much different.
I hope you can get to trust your doctor, call with your questions and anxieties, explain, what's happening and write down everything!, so you can be prepared when you call or for your next appointment.
You are on a new cruse ship, and you will feel okay some of the time, but you still have this disease. It lurks behind the scenes and demands attention. You'll sort it out! Good luck, sarah
Hi Melly. Sorry to hear of your diagnosis. Even though it's not a death sentence it's still hard to swallow. Due to pain, stiffness and swelling I've had to make adjustments in almost every aspect of my daily life. Some of the changes are hard, but life goes on. I've been experiencing symptoms since mid July of 2006 (10 months). I was given a diagnosis of Seronegative RA in December and though more blood work was given a diagnosis of Seropositive RA in February. As far as the fear of MTX don't feel bad, I'm in the same boat. I'm supposed to start MTX this coming Friday. I was also afraid of the Plaquenil that the RD prescribed me back in December. With any luck I think that you'll find that your fear of the medication is far worse than what you'll actually experience when taking it. Just remember it's important to be aggressive with treatment in an effort to prevent your condition from getting worse. Good luck and take care...............Ta2di know how you feel, i waited three months before starting treatment,because i was sooo scared of the mtx. Now i wish i would have started sooner, because if i did i may be off the prednisone by now and feeling much better. what i have learned in this short duration of my arthritis, is you have good days,wake up feeling fine, than the next day you crash and burn. Dont wait too long to start treatment, because everyday you wait the more dystruction is going on in your body, and you dont even know it. You can do it. we have all gone through this fear your talking about. keep us posted. and know we are there for you! :)
kel
Methotrexate has worked very well for me. I've been taking it now for 15 years. I'm now taking 25mgs/week and have not had any bad side effects. You'll have bloodwork done regularly, so your doctor will know if any problems come up with the mtx. So don't be too worried about taking mtx. I know how you're feeling though. I was like you at the beginning as well...I put off taking mtx because I was so afraid of the side effects. Hoping mtx works just as well for you!
Good luck!
I've been on MTX for quite sometime too and have had no problems with it either. It's been the best medication for me so far and I've been on many including many combinations. Right now I only take 25mg of MTX and nothing else besides some OTC antinflammatories when needed and prescription muscle relaxers and pain meds as needed.
Take the MTX now while you are feeling good. Give it a chance to start working and as it begins to start working you can come off the predisone. It's the predisone you should be more afraid of than the MTX. Don't delay taking the DMARDS.....those are the medications that will slow the progression of the disease. Once you've gotten on the proper treatment plan you can eliminate the predisone; which really should not be used long term.
Good Luck......And welcome to the club
I've had RA for 13 years now and only over the last 4 years have I been treated with a combination of DMARDS because there was no need for it. For many, many people with RA it's not nessesary to treat them with more than one medication.
It should be your doctors goal to treat your RA with the most effective lowest dose possible. It's my opinion and has been the opinion of 3 different RD's that I've had over the years that you start low and move up. Figure out if you can control your RA with weaker DMARDS and at lower doses and if you can't then you can move up. If you can.....it's best.
Over time I've had to use higher doses, stronger medications and also medications in combinations with each other; but that hasn't always been nessesary. In my early years I was able to control my RA with Sulfersalizine and Relifin. That's not possible today; but years ago it was. It's bought me a lot of time. Time where my body was not having to use theses medications that so many people are afraid of.
Don't jump over effective medications trying to use what some refer to as "The big guns" hoping to "Cure" your RA early on. It's very unlikely to happen and then once these stronger medications loose their effects; what then? You'll have nothing to fall back on.
The early years with RA are often filled with a lot of trial and error. It takes some experimenting to find medications that work well.....but it's worth the trouble to figure out what will work.
This is my opinion and everyones entitled to their own I suppose.
my rheumy told me that some insurance companys will not cover humara,enbrel etc. until i first try mtx. Than if she doesnt see it working she will be able to have a paper trail that it isnt effetive, and than she can add another.Its too bad that we are at our insurance compainies mercy! Its all about money to them.
kel
I took MTX for more than two years before Humira was nessesary. In my case it was good to try MTX alone and see if it worked well before adding Humira.
In my opinion biologics have not been around long enough. Although I was on Humira for two years with good results; I wouldn't advise any of them unless other options have not worked for you.
MTX has been used with excellent results for many, many years. More is known about the long term results....or risk I should say.
Gosh I am so glad I found you all! Your feedback is so helpful. I hope I will soon be well enough and knowlegeable enough to be able to contribute to helping others.
Pred Pack, Percoset and All: I woke up today feeling back like my usual truck ran over me twice/thrice, burning searing crying pain and inability to make a fist, use my fingers, toes, or bend anything for that matter etc etc. Haven't even been ale to get in the bathtub yet (which I until today have been managing by noon or so).
Don't know what yesterday's relief was all about....Also wonder what I would be like if it weren't for the prednisone. How I could be worse? But guess I could, huh...? And sadly I am sure many are...
Speaking of that, does anyone here notice big differences regarding weather? Yesterday WAS the first NON-rainy day in 2 weeks here and it seems like any good days I have had over the last few months have been clear and sunny - with or without prednisone...
I will start the methotrexate on Friday. Even though I am not going to work right now, I certainly hope to be again soon, and it seems like others use a weekend kind of schedule...in case of needing to manage side effects...right?
Have to be honest though that it is the hair loss possibility that is most terrifying to me. I have always been bothered by my thin hair anyway. To potentially lose more of it, as a single female that isn't sitting around with any promises of unconditional love (or even the promise of a date at this point) is making me feel really sorry for myself. Of course, at this level of physical functioning where I can barely get around my own house, it isn't like even with all the hair in the world, I can meet anyone anyway.....Oh yi yi yi...
I think I may very well be far luckier than most with my Rheumatologist , since it does seem like the treatment plan seems to be on par with other's experiences and I was very impressed with how much time he gave me. I think I will still take the advice though of making an appointment to get a second opinion --- especially since it does take so very long --- just in case... And I do have some fear about the loathsome criminal fact that insurance companies CAN affect what kind of treatment a Dr might suggest. My current one was very definite about not combining meds to start, and as I could see the logic on both sides of this issue....I think multiple opinions might be the only way to try to figure it out.
Thanks again and I really do promise not to be only so self absorbed y as soon as I get it together a little more....:-)
Regards,
Melly
I put off MTX for twelve years...wish I hadn't! I have a lot of damage that I do not believe I would have if I had started the MTX earlier. I also was scared and kept the script for almost a year until my rheumo told me that he thought the window of opportunity for the MTX to be effective was running out.
Needless to say, I started it a little over a year ago and had wonderful year! Went back to work full -time. Unfortunatly when I had to stay ooff of it due to bronchitis, my RA came back stronger. What an opportunist! I increased my dosage and can't wait for it to kick in agian.
Melly,